After 12 years of weekly infusions, today is the last one. It comes with mixed emotions, Hope, Fear, Worry, Anxiety, and Anticipation to name a few. And Gratitude. Heartfelt gratitude.
When Isaac was diagnosed, we didn’t know what the future would hold. We didn’t know if he’d have a future, let alone how far down the road he’d go. When this treatment was approved, we had to fight to bring it to Canada for Isaac, and then fight to keep it here for him. Along the way, we were lucky to help pave the way for other children in need, and I’m grateful for every experience we’ve had from day 1 until today.
I’m grateful for the children and families we’ve met along the way, and those we’ve been fortunate to help and become part of their lives.
I’m grateful for the support we’ve received, for the people who’ve followed our journey, for those who’ve helped us fund our research to find a cure.
I’m grateful for the few of you who where there on the front lines to help pick us up when we were at our lowest, most heartbreaking of moments, standing beside us as our son
fought so bravely for his life.
And I’m grateful for those of you who are still here, those close friends who know our lives have been difficult, and that we have to disappear from time to time to cope and reconnect. I’m grateful to those of you who get that, who are there when we reappear, even if just to bring us in for a quick glass of wine before we have to disappear for a time again.
We’re close, everyone. Thank you to you all for helping us raise these funds to get this research to where it is today – finally getting into kids in need, and hopefully providing them with the cure we’ve been searching for. Special thanks to you, Danny Michel, for helping us raise those funds by sharing your beautiful music with us, and for always saying “Yes” when we were in need.
And to you, John Mayer, for simply being a kind, caring, empathetic and compassionate friend to our son, our family, through this all.
This is the end of the beginning of this story of Hope, and we start the next chapter in 2 weeks time.
Together. Like always.
Pictured: Isaac’s first treatment, and his last. Isaac with Danny Michel and Isaac with John Mayer.